Doug Lindsay

This week I'm on the CBS News podcast #UnsungScience! David @Pogue has authored or coauthored over 100 books & he helps me tell the story of the dog surgery that gave me back my life! Take a listen!!!!! #RareDisease #spoonie unsungscience.com/the-podcast/se…

@SimonBreidert Thank you @SimonBreidert!!!!

The most inspiring and touching TED Talk I ever watched: For 11 years Dough Lindsay was bedbound by a mysterious illness before he developed the cure for his own disease. If one patient can achieve that, what could a whole community do?! youtube.com/watch?v=w4s0uN… @Doug_Lind_Say

9. US Govt recognizes 6 health disparity groups; rare disease not 1. 10. Director of NIMHD & ARHQ Director, together, could change by naming Rare Disease a "Health Disparity Population." #RareDiseaseDay2023 #RareDiseaseDay #RareDC2023 #rarediseaseawareness

5. Disease is rare if under 200k Americans have it. 6. Average time to diagnosis: 7 years 7. Average number of doctors seen: 8 8. Time until all 7,000 have a treatment: 2,000 more years.

Ten Rare Disease Facts from Doug Lindsay, Co-Chair of PCORI’s Rare Disease Advisory Panel (2020-2022) & CNN’s Top Health Story of 2019: 1. 25 million Americans have a rare disease 2. There are over 7,000 known rare diseases 3. More remain unidentified 4. 95% have no treatment

@EverydayDriver @HDriveshare @lotuscars Deal!

Todd’s 2006 Elise has been listed for rent on @HDriveshare, if you find yourself in Park City and want to have a go! We are podcasting today for Tuesday! Have some questions for us? @lotuscars #driveshare driveshare.com/car/2006-lotus…

@EstherSchorr1 @people The full version is in the print issue (that had Betty White on the cover). They had me jump on a trampoline... & look happy at the same time. Tougher than it seems. 😌 people.com/human-interest…

@Doug_Lind_Say @people Wow! Just looked all the way back in my feed and found the shot and tweet. NO idea where that shot came from. If I took it, it’s not in accessible files. So sorry. So point me to the People story!

Two incredible cancer survivors Dan Duffy, Doug Lindsay blew me away...patients take charge against all odds. #MedX

@profgalloway @John_Hempton Stalin sentenced Foreign Minister Molotov's wife to 5 years in a labor camp. Putin poisoned the incoming president of Ukraine 18 years ago. Putin used radiological weapon assassination of dissidents on UK soil. Your idea is truly good. Authoritarian societies are scary bad.

@John_Hempton Interesting thought. I know in some cultures the families would be shamed/punished. Would this happen in Russia? Serious question, no domain expertise here.

Low morale among invading army. Many surrendering. With devaluation, soldiers make 700-2,500€/month. Offer any Russian soldier on Ukrainian soil, who lays down arms, 100k€ and resettlement in the West. If 30k accept (3b€), invasion over, no?

@RealMalachowski Clint Eastwood said "It's what people know about themselves that makes them afraid." I guess they don't trust their team to either ask adult questions or withstand adult answers. #StandWithUkraine

So, I was supposed to give a paid speech on Friday to a client who booked me over a year ago. They just wrote to cancel because they “are not comfortable with a global town hall featuring a former fighter pilot during a time of war.” I have mixed feelings. #StandingWithUkraine

@EstherSchorr1 It's ok. @people Magazine was doing a piece on my story and on rare disease and there was a pic from #MedX 2017 that you tweeted out and we hoped to get a print-res compatible version in case they needed it.

@Doug_Lind_Say Sorry, what picture are you referring to?

It’s #RareDiseaseDay. A chat with @doug_lind_say @pcori @tsctalks_jill @alexisandrea256 @Rhodes_cj @rarepatientvoic @AdrianaMallozzi @morgan_gleason @Purrfectly_Rare @ShiriBenArzi @PowerofPatients @rebsarch @rarediseaseday @RareDiseases @RareAdvocates #RareDisease #SDOH

#RareDisease is a community 25 million strong in the US. Together, we are a COMMUNITY. We must be recognized as a "Health Disparity Group" or we will continue to suffer needlessly & invisibly! #equity #SDoH #RareDiseaseDay health-hats.com/pod159/

Biggest lesson to MDs on #RareDisease Diagnosis: "Rare" doesn't mean "Never." If smart docs struggle, throw up a flag🚩This might be a rare disease! health-hats.com/pod159/

@richardbagdonas @andrewintech @marymcdirmid @RasuShrestha @keenzai @mikebiselli @CambiaGrove @jamcbride @Colin_Hung @innovationrach @JulieReisetter Thank you and congrats on the new book! Is there an audio version yet?

With everything happening in the world it's easy to overlook the daily challenge so many face when tackling rare diseases. Join us for a virtual summit to learn more, and how you can help w/ #RareDiseaseDay2022 eventbrite.com/e/rare-disease…

Great piece in the @NYTHealth on #LongCOVID. A strong summary & overview, plus links & resources to people & sources generally respected in the #postviral, #MECFS & Long COVID worlds! nytimes.com/interactive/20…

@Bob_Wachter And maybe lots and lots of #LongCovid

The new Omicron math: somewhat milder x massively more infectious = overwhelmed hospitals and lots of deaths

@TEDxSTL @people @TEDxSTL is a supportive, inclusive community. I'm happy to have spoken for you all & to have worked with you all year after year too! Thanks for the share

Congratulation to TEDxStLouis alumni @Doug_Lind_Say for his article in @people! After being bedridden for over 10 years by a mystery disease, Doug overcame & pioneered the procedure that cured him. bit.ly/3HFJyy5 #TED #TEDxStLouis #TEDxSTL #TEDTalk #TEDx #STL #StLouis

Love how @Doug_Lind_Say saved himself and now helps other people solve their own mysteries. That's some potent #PeerHealthAdvice - lending people the courage to try people.com/human-interest…

@themupsmuppet @jayrtfm @0bj3ctivity Once we got word that she would be on the cover of the issue with the article about me in it, my small team & I were having lots of Betty White conversations, so when she passed it was a surprise -- she'd been top of mind for days! The @people piece fits her amazing personality.

@jayrtfm @0bj3ctivity @Doug_Lind_Say I'd remove everything for 'this little ego trip', you're just jealous of being in the same magazine as Betty ☺

@0bj3ctivity We're in a nearly empty grocery store with plexiglass shields between shopper & cashier & the video is roughly 30 seconds, but I respect your point. And masks are more important now than ever with case numbers & transmissibility so high. 😷

@Doug_Lind_Say Why was this ego trip worth removing your mask for in an indoor place where people should be wearing masks?